ableism – Rooted in Rights

Lewis Capaldi is Taking a Break. Why Can’t I?

Posted on November 16, 2023November 16, 2023 by Gretchen Gales

On June 27th, 2023 Lewis Capaldi officially announced his hiatus from touring, citing “the impact of Tourette Syndrome” as part of his decision, one discussed in his award-winning documentary How I’m Feeling Now. He did not take this decision lightly, empathizing with fans about how disappointing it is to look forward to a tour that’s been postponed—and the costs associated with it.

There’s no doubt that Capaldi loves touring, his fans, and the ability to play music in front of thousands each night. As a fellow Touretter, I’m thrilled that there is both representation of Tourette’s and the need for rest from such an international star. But I most resonate with the final part of his Instagram statement, which apologizes for rest while simultaneously justifying it: “I’m so incredibly sorry to everyone who had planned to come to a show before the end of the year but I need to feel well to perform at the standard you all deserve.”

While I’ve hardly achieved the same elevated status as fellow Touretters like Capaldi, Billie Eilish, Howie Mandel, Steve Wallace, and others, I’ve achieved a lot in my life. I’ve been Key Club President, a foster for kittens, a published writer, musician, and so much more. This confuses people when I do desire rest.

There are days when I can indulge in spontaneous plans. On other days, I need to reschedule advanced ones. It’s all up to my body, which cannot be tamed on a whim. During times of stress it can flare up, waxing and waning as it pleases.

But you were fine yesterday; you’ve pushed through it before, I think, an echo of others’ sentiments when I cancel or postpone plans. It also shapes others’ decisions about whether or not to include me at all. Their explanation is usually, “I didn’t think you’d want to come” or “It would be too stressful for you.”

This leads to shame, guilt, and feeling excluded, just for being in an unruly body; requests to forgo my comfort and embrace pain for the sake of others’ needs are seen as the “right” thing to do. While there are many times wherein I believe in pushing through (if possible), like an important celebration or funeral, it can be stressful on the body if the brain decides it’s a “tic-ier” day. It often results in having to take muscle relaxers, sedatives, and pain relievers to get back to a manageable spot.

Yet I still feel the need to apologize.

Many with Tourette Syndrome are encouraged to push past these difficulties, which is why you don’t often see people disclose their Tourette’s. As a child, my neurologist focused on controlling and eliminating the tics he believed were temporary…and my fault. He blamed chocolate, video games, SpongeBob, anything but a disability. So the masking began—and worked—and continued throughout my childhood and teen years. I was an honor roll student, involved in many service clubs and honor societies. I hung out with friends, pushing through the discomfort for the most part and making up an elaborate excuse when I couldn’t.

I believed my tics were a personal failure…until my late diagnosis at 22, long after my tics “should” have left. I had to confront the fact that rest was not a privilege, yet the guilt of canceling or modifying plans remained.

Like many others in the world, doomscrolling TikTok is a favorite pastime. User Vermin and the Rats (with a green pixie cut I wish I could pull off) confronts me with truths: “Is it possible you tie your sense of self-worth to your productivity and your ability to help others, and that’s why you feel so guilty when you’re not able to be productive and you have to rest? That you’ve been masking your disabilities for so long, that you genuinely don’t know how to gauge what your needs are?”

It’s Just Nerves: Notes on a Disability by Kelly Davio is an essay collection chronicling the author’s experience as a disabled person in the 21st century. She writes, “If you are going to disclose your illness, our culture tells us, you had better do it in a way as to make other people feel gratitude for their own good health, to take advantage of their robust bodies….” My addition? If you disclose your illness, you better be a superhuman of sorts. A gold-winning athlete. A wildly successful musical artist. Even then, you’ll still need to apologize for the need to rest. After all, your exceptionalism is waning, which is unacceptable.

In many programs across the United States, services for disabled students are referred to as ”Exceptional Education.” If you happen to be “gifted” AND disabled, you’re labeled as “Twice Exceptional.” Disability, as mainstream culture understands it, cannot inherently be associated with anything good at all; it must be paired with something to “make” it okay. In this case, being exceptional is the only acceptable way to exist in a disabled body. Don’t believe me? Just look at inspiration porn, or the objectification of disabled people to make able-bodied people feel better about their own lives.

When people respond to me with “That’s okay” or “You’re still such a capable woman” after explaining how my Tourette’s works, I get frustrated. Of course it’s okay. I never said anything about my capabilities. I never apologized for my existence.

It’s hard to correct them outright. I’ve even had to correct myself when I’ve thought or said something similar to people with other disabilities. It’s hardwired into so many brains that disability cannot coincide with anything neutral or good, even if you’ve lived it. The only way out of it is to rest boldly. After all, one of the primary tenets of disability justice is rest. No maybes, buts, ifs, or sorries. Just rest.

To practice, I’ve been typing out and removing apologies from my requests to postpone or skip events. I often still leave them out of fear or guilt, but I’m slowly improving my self-advocacy, simply taking the rest I’m allowed to take. I can no longer feel the need to “make up” for the way I exist “proving” exceptionality.

Gretchen Gales (she/her) writes…a lot. After realizing becoming a veterinarian meant being good at math, she pursued writing and teaching as a career instead. You can find more of her written and artsy stuff at www.writinggales.com.

A Stake in the Fight: An Activist’s Take on Eco-Ableism

Posted on November 6, 2023November 7, 2023 by Leah Stagnone

I’ve been involved in advocacy on disability and chronic illness-related issues for several years now; my work has taught me important transferable skills. Because I have a deep love for nature and our planet— and since disabled people are disproportionately impacted by climate change —I sometimes ask myself why I’m not using those skills to organize at the intersection of disability and environmental justice.

The unfortunate truth is, everytime I begin to dip my toes into an environmental advocacy space, I’m reminded rather quickly of the reason I haven’t spent much time there. As a disabled person whose access needs don’t always align with the idealized “perfect” eco-friendly lifestyle, I’ve had a few too many interactions with individuals in the environmental activist community that left me feeling misunderstood and unwelcome. I know that I am not alone in this experience.

I believe that living in alignment with our values is important, and for me, that includes being mindful of how my actions impact the earth. I practice eco-friendly habits as much as possible: I thrift almost all of my clothing, I compost, and I’ve made nearly every sustainable swap that one could think of. But as someone living with complex, disabling chronic illness, certain lifestyle changes are not possible for me.

My particular disabilities mean that I cannot simply forego air conditioning in the summer, go vegan, or bike to work. I rely on my car more than I would like to because walking too far can trigger chronic pain. In addition, my weekly immunoglobulin infusions produce an unfortunate amount of plastic waste that is outside of my control.

Some people with disabilities face different barriers than I do to sustainable practices, depending on their needs. I have disabled friends who require plastic straws to drink, and others who rely on pre-packaged foods and single-use items because chronic illness limits their ability to cook. Unfortunately, these kinds of needs and limitations, when asserted in environmentalist spaces, often seem to be met with skepticism, disapproval, or even condemnation.

A few years ago, in a conversation with a local climate organizer, I tried to explain why following a vegan diet is not possible or healthy for everyone. Like many others in the chronic illness community, I’ve endured extended stretches of time during which I could only tolerate a few “safe” foods without scary mast cell activation syndrome reactions. Over the years, I’ve learned that my most consistently safe foods are not plant-based and that I need to give my body whatever nourishment it accepts.

As I explained this to the activist, she asked invasive questions about my medical conditions, expressed disbelief that any chronic illness could make a fully plant-based diet inadvisable, and implied that I was further harming my health by not being vegan. Essentially, someone who barely knew anything about me told me that I was wrong about my own disabled body. I have watched a similar pattern of behavior unfold repeatedly on social media, whenever a disabled person states that a particular eco-friendly change isn’t accessible for them.

I didn’t know until recently that there was a term for this particular brand of disability discrimination that shows up in environmental activism, called “eco-ableism.” Eco-ableism is the result of nondisabled people failing to consider that their proposed solutions to environmental issues can make life inaccessible for disabled people, all while neglecting to recognize the fact that disabled people are some of the most vulnerable to the effects of the climate crisis. In my experience, eco-ableism often also involves a failure by nondisabled people to believe or empathize with disabled people when we speak up about our access needs or the ableism that we’ve encountered.

There are steps that environmental activists can take to prevent eco-ableism and make their spaces more welcoming to disabled people. One of the changes I most hope to see is a shift away from the scrutiny that disabled people are often met with when we assert our needs. Everyone can be a better ally in general to disabled people by trusting that we know our own bodies and access needs better than anyone else can.

Unfortunately, nondisabled skepticism about our access needs is nothing new for the disability community. Many of us know what it’s like to fear that we’ll be harassed for using accessible parking, accused of “faking” if someone sees our legs move in a wheelchair, or judged as “lazy” if we are unable to work.

Activists striving to be anti-ableist in their organizing can avoid perpetuating this exhausting scrutiny by accepting a disabled person’s stated access needs without disbelief, invasive questions, or unsolicited feedback. If a disabled person shares that there is a particular way they need to eat, drink, get around, or take care of their body, the first instinct of fellow advocates should be to believe them.

I’ve also noticed that eco-ableism typically manifests when activists are spending energy analyzing each others’ individual actions, often at a detriment to work on larger systemic issues. To be clear, our individual choices matter; we should all do what is within our abilities to live in alignment with our values. However, irresponsible corporations and government inaction are largely to blame for the climate crisis— not disabled people who need straws to drink.

I hope that, instead of questioning individuals about whether their disability actually prevents them from making a specific sustainable swap, advocates will redirect that energy toward systems change that creates a more just world for all of us. Since climate change has a disproportionate impact on people with disabilities at a systems level, an inflexible focus on individual actions that frames us as the problem ironically only serves to further alienate a marginalized group from advocacy on an issue that we are experiencing most acutely.

Finally, to avoid eco-ableism and ensure that proposed environmental policy changes don’t inadvertently leave any marginalized group of citizens behind, it’s also essential that disabled people play a significant leadership role in shaping environmental movements and policy.

When diverse perspectives are valued and integrated into a movement, the solutions we fight for are solutions that lift up all of us, as opposed to unintentionally creating more obstacles for some. To achieve true equity, not only do we need to make sure that disabled people have seats at the table, but also that our viewpoints are regarded as important and meaningfully incorporated into decision making.

Despite the barriers some disabled people might face to a sustainable lifestyle, disability justice and environmental justice are not in conflict. Rather, they are deeply interconnected, and the disability community has a serious stake in the fight for the future of our planet. Disabled activists also have valuable skills and perspective to bring to environmental advocacy; I’m confident that our involvement will only make the movement stronger. While eco-ableism is discouraging, I’m optimistic about the kind of world we can build when we work together to ensure that all perspectives, abilities, and needs are taken into account.

Leah Stagnone (she/her) is a disabled community organizer and nonprofit professional based in New England. She is a Co-Founder of #MEAction’s New Hampshire State Chapter, where she fights for equity for people with infection-associated chronic illnesses like ME/CFS and Long COVID. When Leah isn’t engaged in advocacy work, you can find her gardening, reading, spending time in nature, or partaking in one of her many crafty hobbies.

Chronic Inflammatory Response Syndrome: An Unnecessarily Arduous Journey to A Rare Diagnosis

Posted on October 26, 2023October 26, 2023 by Mia Tompson

As I sat in the waiting room of my doctor’s office, a wave of hopelessness washed over me. It was my fourth visit that month; I was beginning to feel desperate and invisible. I’d been experiencing strange symptoms for months—fainting spells, headaches, vertigo, flu-like symptoms, and excessive thirst—and none of the doctors I’d seen could give me a concrete answer.

At the time, I was working at a startup in Baltimore. I chalked it up to too much coffee and too little sleep. Over time, the symptoms got progressively worse. I would go to work having pounded ibuprofen, coffee, and anxiety medication. Because I presented as “normal,” any time that I mentioned needing to rest or take some time to look after my health, everyone from doctors to friends either directly or indirectly told me that I was simply bad at stress management and everything was all in my head.

I felt hopeless. My symptoms were impacting my ability to work and enjoy life, but no one seemed to take me seriously. Doctors would do blood work, note that it all came back normal, and say “Let’s see if things have improved in six months” without prescribing me anything except for occasional nausea or anxiety meds.

Eventually, I quit my stressful startup job, thinking that perhaps my symptoms would go away if I could achieve a better work-life balance. Spoiler alert: they did not. As time went on, I started developing sensitivities to many of my favorite foods and drinks. After eating them, my light-headedness and excessive thirst would increase significantly. I began tracking both my food intake and my symptoms and, after finding a near-perfect correlation between fainting and three different foods and beverages, I went to an allergist. She promptly told me that I’d made it all up and needed to work on my food phobias.

I had to quit two more jobs due to how much my symptoms impacted my ability to work. Last year, things crescendoed. My excessive thirst led me to drink so much water that I was hospitalized for hyponatremia (low blood sodium) and my vertigo and headaches became unbearable. I also began to experience overwhelming brain fog that prevented me from getting anything done or learning anything of substance while working.

After ruling out diabetes, my doctors simply told me to drink less water; the thirst was probably all in my head. I spent hours each day on the phone calling specialist after specialist asking them to see me, following up on test results, having my medical records sent to other facilities, and handling all of the other logistics of seeking treatment for my unidentified illness. I also began diligently documenting every aspect of my daily life. This comprehensive log—detailing what I ate, drank, did, and the symptoms I experienced—became crucial. Before each doctor’s visit, I’d analyze and share key highlights from the data to ensure that I wouldn’t waste time rehashing old details and to preemptively address any simplistic theories they might want to revisit.

I had all but given up when I stumbled upon a health podcast in which the host is told by a specialist that she is demonstrating hallmark symptoms of Chronic Inflammatory Response Syndrome (CIRS). She was the first non-diabetic person who I’d heard mention that she experienced excessive thirst as a symptom and her other symptoms matched mine almost completely. Excitedly, I began googling the condition to learn more, despite having been told over and over by well-meaning but misguided friends, medical care providers, and family that I should avoid self-diagnosing or reading too much about illnesses online. I was tired of letting the “experts” mishandle my health and my life.

I learned that CIRS is a chronic condition that causes inflammation in the brain and can eventually lead to other autoimmune diseases and neurodegenerative disorders. It often develops when someone who is genetically susceptible to the types of molds and bacteria that are prevalent in water-damaged buildings gets exposed to those pathogens. Because CIRS patients are unable to handle that exposure the way that the rest of the population can, they get sicker and sicker unless they get treatment.

Common CIRS symptoms include flu-like symptoms, headaches, brain fog, blurry vision, light-headedness, excessive thirst, and weight gain. If left untreated, the brain gets so inflamed that many begin to experience dementia-like symptoms. Additionally, CIRS can even cause or exacerbate pre-existing anxiety.

I found a specialist who works with Dr. Andrew Heyman, a leading researcher on CIRS. After several weeks of extensive blood work, brain scans, and other testing, the diagnosis was official: I had CIRS. Knowing how serious CIRS is, I am glad that I listened to my gut. I only wish that I had been more insistent that it wasn’t just in my head so that I could’ve received a diagnosis sooner.

Looking back, I realized that my experience is not unique. Disabled individuals often struggle to have our symptoms taken seriously by the medical community. I had to fight for years to get the proper diagnosis and treatment and it was only because I stumbled upon a podcast that I finally found some answers. According to studies by Dr. Heyman, over 20% of the population is genetically susceptible to the disease, although the gene has to be activated by a precipitating event for the individual to develop CIRS. I wonder how many people are silently suffering with the disease that I am now being treated for.

The struggles that disabled individuals face extend beyond the medical community. We also face discrimination in the workplace and in our everyday lives. As someone who experienced CIRS as a result of a water-damaged work and home environment, I feel that it’s important to speak out about workplace and tenant rights and safety as they relate to disabilities.

The repeated dismissals I faced aren’t merely personal grievances; they expose a systemic failing. People with disabilities, chronic illnesses, and other serious medical conditions shouldn’t have to sit on waitlists and fight to be taken seriously when they finally do get to see a doctor. As infuriating as my experience was, my education and majority ethnic identity made it easier for me to rebut doctors’ dismissals, flooding them with data, carefully reasoned arguments, and ultimately demands to be treated better.

A system that prioritizes only those who can advocate for themselves creates barriers for the less privileged and for those with intersecting marginalized identities. Whether inadvertent or by design, the way that the healthcare system works today falls short of respecting human dignity, to the detriment of society. Every individual deserves a voice, care, and understanding. We need more than hope. We need actionable change that ensures every person’s health and well-being is genuinely prioritized.

Mia Tompson (she/her) is a graduate student with a chronic illness. She lives in Boston, and when she is not studying or working, she enjoys baking, photography, and swimming.

Monsters in the Closet: Facing Fears of Inaccessibility

Posted on October 19, 2023October 19, 2023 by Fifer Charlie Loftus

The portrayal of disability in horror films is often very problematic—think of mental illnesses such as Dissociative Identity Disorder (DID) in the 2016 movie “Split.” Yet, horror movies hold a special allure to me. This could be because my mother has always been opposed to horror, gore, and movie violence in any form—except for distinct comedic effect. However, I think horror movies can hold a certain allure for disabled viewers due to their relatability. Being disabled can be incredibly anxiety-inducing. I find myself constantly in a state of what-if when dealing with aspects of my disability in an inaccessible world:

“What if TSA confiscates my medication? What if the environment there drives me to sensory overload and there’s no way to leave? What if I don’t “look” disabled enough to receive the accommodations I asked for?”

Horror movies often portray disabled people as the horror, but the true horror is the inaccessible world. I remember I hated tag, the default game of every elementary schooler, because I was always caught first. Years later, when watching horror movies I remembered the fear of being the farthest behind like the characters being picked off first by the monster.

In a haunted house horror, the family is tormented by fears and horrors while inside the house; outside of it, their anxiety over what lies inside tends to devour their lives. As long as the environment around us remains inaccessible, people with disabilities are constantly stuck inside the haunted house. Assuming that our home environments are accessible to us, that consolation can be our one reprieve. However, not everyone is that lucky.

Recently, one of my what-if scenarios happened. Since the beginning of the pandemic, I’ve done everything I can to prevent getting COVID-19. I have asthma and a history of lung disease. For many disabled people with similar concerns, the COVID-19 pandemic elicits a seemingly never-ending fear: what if I get COVID? Although vaccinations and new antiviral medications tampered these fears, the reality of a positive COVID test was still a shock.

By December of 2022, I’d made it through almost two full years of negative results. Each time my reactive airway and lungs flared up at an everyday cold, I’d take a test only to be negative. At this point, I did not expect to test positive, yet that second pink line appeared thick and clear. It was undeniable. Although I coughed and wheezed and my chest tightened, ultimately I didn’t need to be hospitalized. This was a feat I owe to vaccinations and modern medicine.

The real horror movie began after COVID, when suddenly my asthma was significantly worse. My pulse oximeter showed my oxygen levels dropping regularly to low 90s, a never-ending cough developed, and I was overtaken by a level of fatigue that I’d never experienced before.

Again, the horror for me was not my symptoms but the inaccessibility I encountered in everyday situations. The steep stairs to my apartment became the equivalent of a long, dark hallway from a suspenseful horror film. I started using a cane to combat the fatigue so that I could make it through my work day. My slow pace and inability to run created an even tighter time crunch, worsened by my ADHD. Everyday household tasks, such as laundry, became impossible as I no longer had the energy or strength to haul it to the laundromat without bending into a coughing fit or asthma attack.

Eventually, I was prescribed cough medicine and a new inhaler that managed to restore my asthma to a controlled state after a few more weeks. However, my asthma did not disappear and COVID-19 lingers.

A coping method I’ve been taught for anxiety is to play out a worse-case scenario. This way you see that even the worst situation your anxiety can throw at you is not world-ending. One therapist explained it to me as “…seeing monsters in the closet makes them less scary. It’s the idea of the unknown that is the most terrifying.” I played out my COVID-19 scenario in real time and, despite the real struggles I faced dealing with the aftermath of the virus, I found ways to accommodate myself, even when facing inaccessibility.

Horror movies push monsters out of the closet. Most horror movies, especially the haunted-house subgenre, end in a tense resolution of the protagonists leaving the haunted area, often with the monster lingering in the background. In “The Shining,” the mother and son manage to get away unharmed, but Jack is left at the hotel, mad and murderous. The threat of fear lingers on, just as the threat of inaccessibility never fully dissipates.

People can develop a disability at any point in their life, even people who already label themselves disabled have fluctuating support needs. These are all themes that linger in the back of horror, often cloaked in offensive stereotypes. I often wonder what horror stories and movies written by disabled people could look like. How would we portray the everyday horrors of inaccessibility? Inspiration porn pities us and stereotypical horror films label us monsters.

However, we are just as human as any nondisabled characters, with flaws and triumphs that make us neither distinctly hero nor villain. Let’s take possession of the real monsters—the world’s accessibility barriers—and bring them out into the harsh daylight alongside the ghosts and demons on television.

Fifer Charlie Loftus (they/he), who goes by Charlie, is a queer disabled writer who lives in New York. He works in a library and enjoys reading, writing, and playing board games in his free time.